Thursday, 30 December 2010

It's been a few weeks since I've written and many of you may be wondering what happened. I went from posting several times a day to nothing for weeks.Well, quite simply, I am tired. The constant onslaught of articles, the nasty comments, the blinkered views, have all combined to make me feel worn out.The right wing press and believers have been doing their work on me and making me feel like I have to constantly justify myself, why I'm not working, why I'm claiming benefits.

I'm ashamed to admit it in the face of all the admirable and ongoing action from others but that's what it is. I have been sleeping a lot and my MS symptoms have been flaring again because I have caught a cold. Yep, a normal, everyday cold. For most people a cold is nothing but an irritant that makes them feel a bit icky. For me, it makes me so tired I could cry and makes my head hurt enough to stop me sleeping properly.I don't have the energy or the mental faculty to write with my previous zeal. And that in itself makes me feel bad. Because I want to be fighting, I want to feel useful and do something against these cuts that will make the lives of so many people miserable.There is so much out there that makes me angry and I need to do something about it. But my body won't let me.

And that is part of the issue. If I have an illness that affects me to the point where I can't fight for myself, then why should I feel bad about that? Why should my own Government make me feel bad? And why would they be trying to implement plans that will make my life harder? People like me aren't starting from the same level playing field. But the government refuses to see that. And that in itself makes me feel even worse.

I don't have the strength or the energy to fight right now. I need others to fight for me. I hate that. And I hate that I don't see it happening. There is solidarity for the students, solidarity for the tax avoidance protests, solidarity for the public sector job cuts. As there should be. But if I can support them in the small way that I am able then why aren't they standing in solidarity with me?

Thursday, 23 December 2010

The eponymous perfectstorm of Sebastian Junger’s book happened when two separate weather systems, an Arctic front trekking south through Canada and the remnants of a hurricane trailing north up the East coast of the US intersected each other with precisely the wrong timing, turning two individually dangerous storms into a single storm of disaster-movie proportions that left destruction and tragedy in its wake.

I’m starting to wonder if The Perfect Storm isn’t an all-to-appropriate metaphor for what we are facing as disabled people under the current government. Even before the government came into power we were facing smear tactics from the yellow press, smears that now come with backing from ministers and DWP, alleging we are all (benefit claimant or not) benefit cheats who fake our disability in order to defraud the hard-working conservative voters, sorry, taxpayers of this country. Then along comes George Osborne, using the Budget Speech to further confuse people as to which disability benefits are work-related and which are a recognition of all the costs we incur just trying to survive. Next thing we know the cuts are coming so thick and fast there is no chance to challenge them individually: ESA to go, replaced by some nebulous Universal Credit that will make it far more difficult to separate out the case for disability issues; such as the harsher elegibility criteria that will undoubtedly come with it; contributions-based ESA to go outright after a year of claiming, no matter that disabilities don’t magically disappear after a year; DLA to be done away with and replaced by yet another look-alike that just happens to have harsher eligibility criteria, Higher Rate Mobility to disappear entirely for those in residential homes, an act of unbelievably penny-pinching spitefulness; Access to Work funding slashed across a whole range of enabling items, which will undoubtedly be seen by employers as yet one more reason not to employ us (never mind that the government are convinced we could all find jobs if we really wanted to); council funding slashed, leading to far more pressure on care budgets that were already being inappropriately pressured; ILF closed, potentially to go entirely, hitting those in the most critical need of extensive care and support in order to function with any kind of equality in society. Add Ian Duncan Smith blaming disabled benefit claimants for single-handedly bringing on the world banking collapse and is it any wonder that we are left feeling attacked and demonised by the very government that is supposed to protect us from this kind of disablist hatred?

So disabled people inevitably want to protest, to draw the attention of those who aren’t directly affected by the cuts and the vilification and ask them if this is the kind of society they really want to be part of. But at the same time that we are trying to protest we have the students and their supporters campaigning (rightly!) against cuts in the education budget, seizing the headlines in a way that we cannot. As if that were not enough, we have all of this happening in what seems headed to be one of the worst winters in half a century. Disabled people have difficulty managing a physical protest at the best of times, I long since gave up on just going into London as far too much physical effort, never mind protesting on top of that, and I’m probably one of the physically more capable disabled protesters. Add foul weather to that, with many disabled people unable to tolerate cold or unable to navigate slippery pavements, and many of us are simply physically scared to travel at the moment. Then along come London’s finest, and fling Jody McIntyre out of his wheelchair not once, but twice.

Scared of the cuts, scared of the hatred whipped up by tabloids and ministers, scared of the weather, scared of the police, disabled people are caught in a perfect storm of fear, and isn’t that something our entire society should be ashamed of?

Monday, 20 December 2010

The 12 Days Of Cripmas is a topical take of a classic carol listing the benefits and services currently being removed from disabled people in Britain. The lyrics were written by a user of the Ouch messageboards, sent to Where's The Benefit and the track produced and directed by BendyGirl of The Broken Of Britain. We're all incredibly proud of Imana our 11 yr old singing star who's mum has Multiple Sclerosis.

Disabled People Against Cuts are calling for urgent action today to prevent changes to Housing Benefit that will push disabled people further into poverty. The group, which organised last week's protest, is calling for us to e-mail MP Stephen Lloyd. He has the casting vote today on changes to housing benefits that could disproporiately affect disabled people. The government is trying to sneak these changes through with as little debate as possible.

Details and advice on what to say in your e-mail are at DPAC's page here - the address for his office is office@eastbournelibdems.org.uk. They suggest that we just write a short e-mail reminding Mr Lloyd that this could lead to more and more disabled people living in extreme poverty, having to be housed in temporary/unsuitable accommodation, or in care homes. It might be worth mentioning to him that we appreciate his vote against the tuition fee rise, and that we hope he'll show us the same bold support.

They'd also like us to e-mail Steve Webb, a Lib Dem DWP minister who has said that disabled people have too much money and therefore we do not need winter fuel allowance. This is not only an attack based on misinformation, but it also goes against the Lib Dem's pre-election policies. They promised us Winter Fuel Allowance. Given that they now can't keep that promise, they've U-turned with a cruel, damaging statement that chimes in nicely with the coalition's wider attack on disabled people. We can't stand for it. I'll be e-mailing Steve Webb today to tell him what I think - steve@stevewebb.org.uk.

The more of us that do this, the better. Protesting can happen from home, too.

In the last few months we have seen an onslaught of cuts, reforms, and changes in every aspect of our society. Disabled people have borne the particular brunt as in many cases, the schemes and funding being withdrawn from us is not so much about quality of life, as about the absolute basics of life.

But now, finally, a topic has been breached where Prime Minister David Cameron feels strongly enough to speak out. He has boldly gone on the record as stating that certain current recently-reformed arrangements devised for minimising fraud and ensuring the proper expenditure of public money are "not acceptable." He has said that he recognises that the system has "caused a lot of pain and difficulty" and has pledged to make changes to rectify this.

The National Audit Office (NAO) have stated that £13.9 million of expenses claims have not been validated because they were unable to inspect any supporting documentation. A familiar refrain is that MPs (and, presumably, their secretaries) are finding the claims process too difficult. This article from June has an absolutely beautiful collection of whinging hyperbole from MPs who have surely never seen the administrative tangle that the average disabled person is expected to efficiently handle.

At least Mr Cameron and his colleagues are clear where their priorities lie.

Thursday, 16 December 2010

Yesterday I went down to Whitehall to protest opposite Downing Street as part of the National Day of Protest Against Welfare & Housing Benefit Cuts. I was a little bit late so the protest was in full swing by the time I got there. So as soon as I arrived my heart broke; there were only about 30 people protesting. I realise that disabled people are seen as largely unimportant by society so I wasn't going to see the 30,000 that come out to protect education, but to see so few was devastating.

When the 12:30pm Downing Street protest wound down a few of us went to grab a pub lunch before heading to Trafalgar Square for the 3pm protest there.

Once in Trafalgar Square DPAC had planned to perform an alternative nativity play under the tree. Trouble was, Mary hadn't turned up. There was much bustle while they tried to find a new Mary (I declined the invitation).

Eventually a Mary volunteered and everyone moved themselves under the tree.

The Heritage Warden getting pushy.

The discussion after the Heritage Warden said he was going to call the police. The police came and said that we were fine there as long as we were quiet.

I missed the first couple of seconds of this speech which places the monologue in 2015.

It was at that point that I left. The rain had soaked through my gloves so my hands were getting cold (over the years I've broken almost all my fingers and when my hands get really cold all those old fracture sites feel fresh). The rain had also soaked through the knees of my trousers (being a wheelie my knees are at an angle to catch every drop of rain that falls) and my boots were moist and heading towards soaked through (and just like my fingers I've broken a hell of a lot of bones in my feet and they don't appreciate the cold either).

My overwhelming experience of the day was disappointment: Disappointment that so few people care enough about our social housing and welfare state. The way I see it, for currently privileged people campaigning to save social housing and benefits is like taking out an insurance policy. You hope you won't need it, but it's there as a safety net in case something goes wrong in your life plan. On Twitter recently there's been much talk among students, trade unions, UK Uncut types and general leftie tweeters about "#solidarity" and I know of many disabled people who've shown support for others facing cuts: Where was the solidarity for us?

A lot of disabled people are not in a strong position to protest against the cuts. Some of us are housebound or bedridden. Some of us have crappy immune systems and this is a really bad time of year for viruses flying round, or are just permanently too ill to go out for a whole day. Some of don't have suitable mobility aids or access to transport that would allow us to get to a demo. Others of us have bodies that couldn't withstand the cold and rain on a day like yesterday. I know my bones and joints would've been happier if I'd stayed home yesterday but I felt that I couldn't sit in my council flat hoping someone would protest on my behalf because if I did I might not have a council flat left in a few years!

Then there are the disabled people who were scared into not coming yesterday. Because we live in a culture where many disabled people are constantly afraid of leaving the house in case they get spotted walking/socialising/shopping and accused of benefit fraud (thanks to campaigns like The Sun's) people are too scared to protest. And apparently if you can protest you must be faking your impairment.

Then there were the people too scared to come after witnessing violent scenes at recent student protest, particularly what happened to Jody McIntyre. A lot of disabled people injure more easily than Joe Average (I myself have got brittle bones) so it doesn't take too vivid an imagination to picture yourself more likely to get hurt than most protesters. And if the non-disabled Alfie Meadows can be left needing brain surgery...

It's quite depressing that the government is not only disproportionately targeting the cuts at disabled people, but they're also scaring us into not using what little voice we have. If the government have got us too scared to protest by making sure everyone thinks we're scroungers and the police have terrified us into not hitting the streets then they can continue with the attacks on us by saying "well, no-one objected."

The next protest is on January 24th 2011 and if you can, I'd strongly urge that you come. Even you non-disableds, whether it's out of solidarity or as an insurance policy for your future.

This is a guest post by Martyn Sibley and originally appeared on martynsibley.com

As always my life has been fast paced and on the tiring side. I am glad to say despite winter and general work tiredness, I am feeling good and looking forward to xmas. Due to things being busy, this blog on the recent Independent Living Fund (ILF) proposals is not the heavily researched or laid out as an intellectual thesis, as I would usually prefer ;-)

In some ways this is no bad thing either. You can easily google for what the ILF is, their history and for policy documents on independent living. What is more difficult to find is the real way in which recent events affect an individual such as myself. While I am going about my intricately balanced but effective care based life, the seeds of doubt have begun to enter my conscious.

For those who haven’t read my blogs on my care: I require 24/7 care to enable me to hoist, dress, cook, clean and have personal care. My needs were assessed by my local authority who have an obligation to provide the services I require. I am also a member of the ILF who enable more severely disabled people to access additional funding, enabling a more independent life to be upheld. Through these 2 funding channels I commission and pay 3 people to cover my care rota through the year. Having this support ensures I not only eat, drink and wash, I am able to live a fulfilled life; both career wise and socially. Hopefully my blog captures this essence and inspires others to live life to the full too.

So when news arrives the ILF will be finished by 2015 my ears pricked up. I know there have been lots of consultations around government policies and budget spending, so I didn’t jump to conclusions. Then yesterday the fateful letter arrived explaining; they had written in June of potential changes, worked with coalition government on the options, Maria Miller announced the funds closure in 2015, they will be in touch to consult on how they will fill the void in 2011.
It is a good thing that as a service user effected I am meant to play a part in the next steps. However to take away half of my care package means I would ‘suggest’ to them (understatement of the century) something should replace the void. I can only see for the sake of simplicity that the local authority would just be expected to pick up the tab. However knowing getting the amount I currently have was difficult when I moved to London. Then with the recent government cuts for local authorities, is this really the case?

If the void is filled, I dont care in what way, I will be happy and continue life as I do. However having ILF stopped and being potentially moved to another framework is bound to cause teething problems impacting my life. Should the void not be filled, the dread kicks in. With half the care package I would turn to my PAs and announce a pay cut. The likelyhood of anyone working 3-5 days straight for 24 hours is remote. They are great people and care for me deeper than just a job, but its not economically sustainable for them as people. So, then comes the point of would anyone of the right qualities work for this? No. Could I cope with less hours? As I need help to get to bed, to turn over in the night and to get up, I would need support for those hours. But then I need help in the day to use the loo, make drinks, food, go to work. This all before I might like to visit a friend every now and then… You can see the dilemma. At this stage I may need to move back to Cambridge after quitting my job and selling my flat, rely on friends and families good will, lose my independence and not be even a shade of my current self.
So whether an answer is found or not, there are a lot of worries and concerns I have right now. With 4 years to go I need to win the lottery or get rich quick. However apart from those options its a scary prospect right now.

What do you think to this and various other recent government announcements?

Tuesday, 14 December 2010

On the first day of Christmas the Government took from me the right to peace and harmony.

On the second day of Christmas the Government took from me,social standing,and the right to peace and harmony

On the third day of Christmas the Government took from me,my I B,social standing, and the right to peace and harmony.

On the fourth day of Christmas the Government took from me,my contributions,my I B, social standing, and the right to peace and harmony.

On the fifth day of Christmas the Government took from me,my bu-us pass,my contributions, my I B, social standing, and the right to peace and harmony.

On the sixth day of Christmas the Government took from me,rights to housing,my bu-us pass, my contributions, my I B, social standing, and the right to peace and harmony.

On the seventh day of Christmas the Government took from me,mobility in care homes,rights to housing, my bu-us pass, my contributions, my I B, social standing, and the right to peace and harmony

On the eighth day of Christmas the Government took from me,5 years of pension,mobility in care homes, rights to housing, my bu-us pass, my contributions, my I B, social standing, and the right to peace and harmony

On the ninth day of Christmas the Government took from me,council funded care,5 years of pension, mobility in care homes, rights to housing, my bu-us pass, my contributions, my I B, social standing, and the right to peace and harmony

On the tenth day of Christmas the Government took from me,All my DLA,council funded care, 5 years of pension, mobility in care homes, rights to housing, my bu-us pass, my contributions, my I B, social standing, and the right to peace and harmony

On the eleventh day of Christmas the Government took from me,Independent Living Fund,All my DLA, council funded care, 5 years of pension, mobility in care homes, rights to housing, my bu-us pass, my contributions, my I B, social standing, and the right to peace and harmony

On the Twelfth day of Christmas the Government gave to me,a ticket to Dignitas.

Monday, 13 December 2010

A Written Ministerial Statement from the DWP today states that the Independent Living Fund (ILF) will be closed in 2015. As well as this, it says that existing ILF users cannot be assured of receiving the level of support they currently get post-2015.

In the same breath as saying the government is committed to disability equality and choice and control for disabled people, the statement says that ILF is "discretionary" and "financially unsustainable".

But that doesn't make today less of a shock. Others will highlight what a disaster this will be for the 21,000 ILF recipients, for the simple fact that it is. When taken in combination with the proposed changes to Disability Living Allowance announced last week, it's nothing short of an out-and-out attack on disabled people.

And to know who we're talking about here, note that the ILF delivers financial support to disabled people in order to advance standards of independent living. In order to access ILF, an individual must already get at least £340pw support from a Council and get the higher rate care component of Disability Living Allowance, as well as have less than £23k in savings/capital.

This means that ILF is focused on those people with some of the highest and most complex support needs there are.

Even though it already had significant reputation problems in this area, the government can't speak with any sort of credibility on the topic of disability equality any more.

Indeed, what the government says on disability issues is a world away from the reality of its actions.

(As an aside the Written Statement says it will hold a consultation "next year" to determine what will happen to the existing users on ILF post-2015. That's a number of months for ILF recipients to worry, without even having the opportunity to have their say on the cut. It also gives the impression that the government's overriding concern is to simply save the ILF's £359m budget and transfer the responsibility to that well-known set of organisations literally swimming in money, erm, Local Councils.)

I had thought I had thoroughly deconstructed the WCA Review, but in reading another DWP document I found that a major assumption in the WCA Review actually lies at odds with the DWP's own published findings.

"Support is available on JSA that if explained to claimants could allay some of their fears about “failing” the WCA as well as helping claimants to use the WCA to take a first step back towards work and the positive effects that this brings. However, more information on this support is required to reassure claimants of what follows the WCA." (Chapter 4, Point 10)

"To offer an effective and supportive service to all of the Work-Ready group the Review believes that more needs to be done within JSA to properly support people with more moderate but still limiting health conditions or disabilities. This is both those who report a health problem whilst on JSA and those who have been claiming ESA but have not met the WCA threshold and have subsequently claimed JSA.The relative weakness of the JSA regime in helping such people back to work is well documented. Compared to the overall JSA population, those who claim JSA after a period of time of IB/ ESA have a notably slower off-flow rate and are five times more likely to flow off into inactivity or to try and claim another benefit again, and only half as likely to move into work as other claimants." (Chapter 5, report's emphasis)

And:

"The changes to the threshold that have accompanied the introduction of the WCA are likely to mean that the jobseeking regime will have to deal with greater numbers of people with a genuinely limiting health condition or disability. Much of this increase will come from those with a higher level of impairment than the regime has previously had to deal with.Therefore, the Review recommends that an immediate focus is placed on ensuring the JSA regime offers more tailored, appropriate and personalised support for those people in the Work-Ready group with a health condition or disability" (Chapter 5)

Now I find Professor Gregg's report, with its punitive language and lack of any understanding of, or empathy for, the impact of conditionality on individual disabled people to be particularly repellent, but if, looking specifically at JSA support for disabled people, it says the equivalent of 'it's terrible, even for comparatively simple disabilities it is 5 times worse than for non-disabled people' yet Professor Harrington, talking about precisely the same thing without looking at it in detail, says that disabled people shouldn't worry about the availability of support on JSA, and in fact will be reassured if they know more, then don't we have to not just worry, but raise a very large question mark over the quality and internal logic of the WCA review?

Last week the Office for National Statistics released interim results of a Life Opportunities Survey, looking at the social barriers faced by people with impairments, in comparison with non-disabled people. (They refer to "people with impairments", rather than "disabled people", because they are specifically looking at the barriers that cause impaired people to become disabled by society - a social model definition of disability.) It can be found here, with EasyRead and audio versions available. The Guardian has already interpreted this survey as showing that "disabled people are twice as likely to miss out on careers, courses and holidays". More than that, though, it provides evidence of the major disadvantages that disabled people face in our society, showing exactly why we are so in need of the benefits and services that we're fighting to protect.

There are some interesting results in this survey. A recurring issue comes up in the area of paid work. 56% of people with impairments experience barriers to doing paid work, compared with 26% of people without impairments. This could be interesting evidence for campaigning groups to present to the government over welfare reform. It's easy for the government to say we should just get back to work, but this is evidence of what we already knew: if we face twice the barriers to working that non-disabled people do, on top of a general shortage of jobs in this economy, then it's really not that simple.

Related to that is my favourite finding from the survey: 93% of people who are off work due to sickness are officially impaired. This may seem obvious to us, but with government and media trying to persuade us that we're all scroungers, it's really interesting to note that this survey makes it seem unlikely. People on Incapacity Benefit, ESA and other disability-related benefits really are disabled, based on this survey. That's HUGE, as evidence in our favour, and we need to use it in our campaigns.

The biggest thing that unemployed impaired people say would help them get back into work is "modified hours, or days, or reduced hours" (p.68), i.e. flexible working. That goes for non-disabled people too. This costs workplaces very little to implement and would be a simple way of ensuring more disabled people could work - so why are workplaces not doing this? Related to this, it's interesting to see that disabled people volunteer more than non-disabled people, despite all the barriers we face - we're active in the community, even if we're not being paid. Economic activity is not the only social activity.

Money is another general theme here. Cost is consistently cited as a barrier to participation in society. For example, 11% of impaired people say that tax credits help them go back to work. That's another way of saying that we need extra money to stay in/go back to work. Take note, government: we need DLA and other benefits to keep working. Similarly, 12% of impaired people say they can't afford to heat their houses - twice the number of non-disabled people (p.75). That's another bit of serious evidence in favour of not cutting DLA. We need it to stay well and alive. There's lots more evidence of disability poverty and the need for DLA on page 75 of the survey.

The government and its services don't do well here, either. 32% of impaired people have difficulty using the benefits and pensions services, i.e. the DWP, while 28% have difficulties using the NHS, and 27% find it hard to use social services. We knew a lot of this anecdotally, but it's very useful indeed to see these numbers in research. Government cuts to all these services are going to make this situation worse.

There's significant evidence of multiple oppression in society. People with impairments who are black or Asian face far more barriers than white disabled people (see pages 31 and 43). For me, this suggests we need more services and support targeted at people from minority ethnic backgrounds who are disabled. Another interesting point is that impaired people who are single or divorced face many more barriers than married people. Again, this looks like a money issue to me, although it's probably about (unpaid) care support too. We need to campaign for social care and carers' allowances to be protected from cuts, especially when the survey also shows that 80% of people with impairments rely on family members for assistance and only 12% get paid support inside the home (p.167).

There's lots more evidence here of the major barriers that disabled people face in society, which undermines much of what the government is saying at the moment. People with impairments are shown to face barriers in all areas of life, including community involvement, leisure, education, access to transport, access to hospitals, and even access to rooms within their own homes.

The biggest problem with this survey, though, is the very mixed ways it looks at disability. It claims to be looking at social barriers, using the social model, and on the whole it does that. However, it regularly asks people whether their condition itself is a barrier to participation in society, and people often say that it is. If you have people responding to the survey who don't (yet) grasp how social disability is, you're going to get a lot of people saying they are more disabled by, for example, their arthritis than by lack of access to buildings. Yet many of the barriers they interpret as being all about their conditions may not be just about that. If you can't get to the bathroom in your house, it may seem as though that's because you're in pain. But it may be easily improved by better access to mobility aids, government-funded social care and support, and access adaptations to your house. Many people aren't aware that these services exist, and many more don't receive them because of government cuts. While the government continues to remove services and support from disabled people, it will seem more and more as though we are the problem. But we're not - it's society, beginning with the government, that's the problem. That's why we need to keep campaigning on everything from DLA 'reform' to cuts in social care. With the right access, support and services, we become less disabled. Cuts to services, and draconian approaches that don't take account of barriers, will only make us more disabled.

By lilwatchergirl, with assistance from gavroche2000. Shortly to be cross-posted to Uncovering the Roof, where I'll also try to write some more about how this survey was produced and what its limitations might be.

Friday, 10 December 2010

Companies like A4e, who are paid by the government to get benefit claimants into work, are treated with at best suspicion, and at worst fear and loathing, by many disabled people, especially following TV programmes such as Benefit Busters.

The DWP currently have a shortlist for other companies who are bidding for contracts to carry out government compulsory back-to-work schemes, and worryingly one of the shortlisted companies is the dreaded ATOS, who carry out the ESA medicals, and G4S (formerly Group 4 Security).

Disability Works UK is a collaboration of national third sector disability organisations including Leonard Cheshire, Mencap, Scope, Mind, Action for Blind People, United Response, Pure Innovations, Advance UK and Pluss.

They boast about their £654.4 million turnover, and cash surplus of £15.6 million, which makes me feel a little queasy. As someone who has donated to more than one of these charities in the past, I will certainly never do so again if that is going to be used in a bid for them to gain their place in what is one of the most oppressive parts of the government's new benefit regime.

For charities and voluntary sector organisations who have done some campaigning against the punitive measures put in place within the benefit system, to now want to play an active part in that system, is disturbing. For them to use money donated by people in good faith as part of that, sickening.

And where does it leave our chances of major disability charities campaigning on our behalf against punitive benefit reforms? If they are hoping to profit from the legislation, I cannot see how we can expect adequate support or representation from them.

If Mind, Scope, Mencap, Leonard Cheshire et al win these contracts, will these charities, who are seen by many as the voice of disabled people, be playing a part in benefit sanctions? Will they be working with ATOS as colleagues? Will we ever trust them again?

Thursday, 9 December 2010

This is a guest post by Rhydian Fôn James (mathematician and economist) and originally appeared on Benefit Scrounging Scum

Maria Miller, Minister for Disabled People, should immediately recall the Public Consultation on Disability Living Allowance (DLA) reform, and cease work on reform of this benefit. This should be done because the reasons given for DLA reform are not robust, with little evidence to support the case for reform and, importantly, no independent academic research. The use of the word ‘little’ refers to the two pieces of internal DWP papers used as evidence to build the entire case for reform – a footnote for one reference appears twice on consecutive pages. Thus the case for reform falls apart upon even cursory examination. As such, the consultation questions are deeply skewed and any answers will be likely to support wholesale reform. This is both unfair and unwise, and will cause hardship for many disabled people.

The wildest claim to support reform is that ‘evidence suggests that DLA can also act as a barrier to work’. This passage is footnoted, referring to “Disability Living Allowance and work: Exploratory research and evidence review, 2010, DWP Research Report No. 648” (RR No.648). This report also finds that “he main factor affecting the employment rates of disabled people is their disability or health condition” and that “a larger than average proportion of DLA recipients also appears to be affected by the specific types of impairment that carry the greatest employment disadvantage for disabled people” – yet these findings are not reported in the consultation paper, thus skewing discussion.

In fact, though the report claims that there exists a “perception of disability permanently precluding work is prevalent among individuals with disabilities not already in employment”, there is no evidence cited in the report that suggests DLA could be a barrier to work. The section and all references to it in the consultation paper could be interpreted as an attempt to misdirect, and should be removed forthwith. Further, it should be noted that the consultation commits the statistical crime of confusing correlation with causation. Whilst RR No. 648 does provide evidence that low employment is correlated with claiming of DLA, this in no way implies that one causes the other.

It could be suggested that the lack of evidence pointing to a need for reform has meant that misdirection was used in an attempt to convince the public that DLA reform is necessary. In particular, the graphs presented as Figure 1 and 2, on page 8 of the consultation paper, used to show the DLA caseload increasing at an alarming rate, are flawed in many ways, not least in the fact that no baseline is established for when take-up of DLA by people with disabilities plateaued after its introduction in 1992/93. There are further issues regarding the number of Pensioners as the report ignores demographic trends to show that there is a dramatic increase in claims by people over State Pension age. This is particularly questionable since a Pensioners’ eligibility for DLA would usually depend on their receipt of DLA prior to this – otherwise, they would be eligible for Attendance Allowance. This is not made explicit in the consultation paper.

Figure 2 is also misleading as it could be read carelessly as showing that 8% of the population claim DLA. I am loath to interpret this as intentional misdirection but it is, at the very least, a sloppy drawing of graphs. Another example of sloppiness is the first sentence of paragraph 15 of the first chapter, on page 7 of the consultation paper, reading “In just eight years, the numbers receiving DLA has increased by 30 per cent.” This sentence is utterly meaningless and a misuse of statistics although, once again, I do not wish to interpret this negatively. Yet another example of the spurious use of statistics is Table 1 on Page 9 which presents the “Distribution of current caseload by rate combination”. This table appears between two paragraphs – 16 and 17 – arguing that the current system is too complex and the benefit is not understood. This is an odd, and potentially misleading, place for this data to be displayed.

Beyond misuse of statistics, sloppy presentation of data and lack of evidence, there are further points to be queried. Whilst RR No. 648 does give evidence that DLA is complex and not understood by all claimants, as suggested in paragraph 19 on page 10, this is surely grounds for improving the current system rather than expensively replacing it with an entirely new one. Likewise the assertion, in paragraph 18 of page 9, that there is no system to check that rewards remain correct. The statement that “Two-thirds of people currently on DLA have an indefinite award, which means that their award may continue for life without ever being checked to see if it still reflects their needs” is a rhetorical tautology. Indefinite awards are given to claimants with conditions that will not improve. Whilst it is not unreasonable that medical advances in the treatment of a certain condition should prompt re-evaluation of those cases, this could be achieved by augmenting DLA rather than replacing it.

The core argument of the consultation paper is that DLA is a benefit not fit for purpose. Paragraph 9 on page 6 of the consultation paper states that: “DLA is a benefit that provides a cash contribution towards the extra costs of needs arising from an impairment or health condition.” The arguments presented in paragraphs 14 and 15 of page 8, claiming that the benefit is not fit for purpose, do not touch upon the original purpose of DLA or offer any argument as to why it is failing to meet its original purpose. The information presented is that the DLA caseload and expenditure is a “lot more than was originally expected” and the aforementioned misuse of statistics on the increase in DLA claims. No arguments are presented as to why this means that DLA is not fit for purpose. The only way an argument can be construed is to look at the issue with a preconceived idea that there is an acceptable level of DLA claims prior to evaluating the health and impairment of claimants.

Finally, paragraph 2 betrays this preconception by stating: “We believe that now is the right time to reform DLA”, yet offers no qualification or reasoning for this belief. Paragraph 3 continues by saying that: “We must ensure that our resources are focused on those with the greatest need”, with no qualification or definition of the term “greatest need”. This could be pointed to as a suggestion that those with “lesser needs” will have to struggle unsupported with their impairment, and that the definition of needs is at the whim of the Secretary of State for Work and Pensions.

The arguments above demolish the case for reform presented in the consultation paper, dealing with each point made in the consultation paper. It raises serious questions about the competence of the Minister responsible and the Secretary of State that a consultation paper for reform has been based on such a shocking lack of evidence, preconceptions about benefit claims and abuse of accepted statistical methodology.

I don't know whether I'll be able to make my way through reading the consultation document myself without breaking things and / or having a complete meltdown, but if I do I will try to summarise it in a blog post when I have.

DLA has been in the news a considerable amount since the emergency budget in June this year, primarily because it has been the main disability-focused benefit the government has looked to cut. I've blogged quite a lot on the topic: see here, here and all posts here.

As such, today's consultation on the reform of DLA is of huge significance and interest because it provides far more detail and intent of what is planned for DLA. Below, I summarise what I think are the key issues. (Via delicious you can keep track of other reactions via my tag DLAreform.)

1. The foreword states that:

We are committed to a sustainable and fair system that allows people to work when they can and provides unconditional support to those who are unable to work (emphasis added).

The idea that the reformed DLA system provides "unconditional" support is palpably nonsense. Moving from the system (where people can self-assess) to one where the explicit aim of the reform is to reduce the number of recipients and spend by 20% is quite the opposite.

2. These proposed reforms suggests introducing "conditionality" into the system (paragraph 2.35). The idea is that as part of the PIP, recipients will be required to discuss their circumstances with a professional who offers advice and "helps them access specialist support". I'll explore the intention behind this in point 3 below, but introducing conditionality into the DLA process is a huge shift. Whilst there's been some debate about whether conditionality in employment benefits is right or wrong, introducing it in a disability setting - where people have already passed through so many tests based on their often intimate and personal circumstances - will feel to many like they're being kicked when they are down.

3. Throughout the reform consultation there are references and suggestions that DLA should no longer cover the sorts of support it used to, to take account of the fact that aids, adaptations and equipment are now more part of the general landscape. So, where the mobility test used to be based on ability to walk, the mobility test will now be based on being able to get around - and if there's a wheelchair involved, that will suffice.

The question of how that wheelchair has been paid for - private money, health money, social care money - appears not to matter, which is obviously wrong. If an individual has paid for it, then they clearly had a mobility need. If the NHS or a Council has paid for it, then they obviously thought there was a mobility need. Though it seems innocuous, the intention of the conditionality above will actually require a potential recipient of DLA to explore what "specialist support" is avaliable apart from DLA. By introducing this, and the very narrow focus on what support is in place at the time of assessment, the impression is created that, so long as the need isn't met by the DLA budget, it doesn't matter where it's met from. What wider impact this will have on NHS and social care spending is currently unknown, but I'll bet they won't be pleased by this subtle but important chance.

4. The idea that DLA itself is a barrier for disabled people into employment (para 1.19) just isn't credible. Indeed, the DWP's own evidence (pdf) suggests otherwise. Even if we take this assertion at face value, I'm already hearing of restrictions of what Access to Work will and won't fund to enabled disabled people into employment. Thus, with the government also seeking to reduce what proportion of DLA is spent on aids, equipment etc., these two changes combined means the government significantly risks undermining its own policy of supporting people back into work.

5. The reform paper paints a very confused picture on costs and numbers. It states that over 3m people receive DLA - of which 1.8m are of working age (16-64) - with total spend this year being "forecast as £12bn". But the Dilnot Commission, based in the Department of Health, says that DLA for 16-64 year olds costs £5.487bn (in 2009/10). Furthermore, the DWP's own figures said that DLA cost £6.2bn in 2009/10. In the emergency budget, the government said they would save £1bn (or 20%) of the DLA budget, suggesting they were using the £5.487bn figure. If that's right, why quote the £12bn figure? (Quite aside from this, the government fails to mention that Attendance Allowance currently costs £7.505bn. More on that another time.)

6. A massive change - different to anything we've heard before - is that the DLA reforms are to extend beyond working age to cover children and those over 65 (paras 0.3, 1.14 and throughout). I don't recall the government saying that the DLA cuts will affect this group of 1.2m people, in either the CSR or the Budget. If this is true, the impacts will be huge (and go some way to explaining why the £12bn figure above is included.)

7. There is a mixed picture on the role of self-assessment. The government appears not to trust people applying for DLA under the current system, but thinks that self-review under the new one is fine (para 2.32). If self-assessment in social care, with its considerably larger budget, is acceptable (under the banner of personalisation), then why isn't it acceptable for DLA assessments?

8. In paragraph 1.10, the reform consultation states that "measuring each individual's expenditure would be administratively complex and expensive". And yet they think that checking everyone's needs won't be.

9. Paragraph 2.4 notes that the PIP will require a "new, fairer, objective assessment, which will allow [the government] to identify those who face the greatest need, in a more consistent and transparent manner". Transparency is, of course, to be welcomed. I will therefore look forward to full details of the contract between ATOS - who carry out the medical assessments for DLA on behalf of DWP - and the DWP, along with all its financial information, performance information and details of targets etc.

10. Paragraphs 2.33 and 2.34 talk about the "penalties" that will be put in place for individuals who don't report changes in their circumstances. It's a shame the report didn't take the opportunity to note that the fraud rate for DLA is 0.5% - a rate significantly lower than Income Support (2.9% fraud rate), Incapacity Benefit (1%) and Jobseekers Allowance (2.8%). Indeed, it's lower than the office error rate for the DWP, which stands at 0.6% (data: Benefit Scrounding Scum).

It's only fair to note that there are some good points in the reform paper:

1. Paragraph 2.18 talks about bringing the definition of those who could potentially get DLA into line with the legal definition of disability. This makes sense.

2. Maintaining DLA as a non means-tested, non-taxable, non-NI contributions dependent benefit is right, as is recognising its role as a passport to many other publicly-funded services.

3. Looking to align assessments across benefits, health and social care, and sharing information (with permission) across professionals about those assessments, could be a big win, for both individuals going through the process and to streamline administration (para 0.11). In its Right to Control work (on which I've written a series of posts) the government is developing an infrastructure that could enable this to happen.

4. Throughout this document, the government has finally and explicitly acknowledged that DLA is "not an income-replacement benefit for those who are out of work due to disability" (para 1.1). It's just a shame that the government did so much to encourage the perception of disability as an out-of-work benefit.

Overall, I'm afraid to say there is a lot for disabled people to be worried about in these proposals. There is no getting away from the fact the government has decided it wants to spend less on DLA and is justifying where it is going to draw the line to save the 20% they're looking for.

The most superficial of all the proposals is renaming what has become the potent "Disability Living Allowance" and replacing it with a "Personal Independence Payment", which has the unfortunate acronym PIP, which puts me in mind of Great Expectations.

The problem being, of course, that the government's reforms aren't something that disabled people can think of in terms of hope and promise. Instead, the reforms confirm the very Worst Apprehensions that we held over these reforms.

Tuesday, 7 December 2010

The coalition government have continued slowly turning the screws on disabled people, a task started by the previous government. Harsh cuts to existing benefits and services announced through an eager media have created a climate of fear for Britain’s disabled people. Despite that, when finally announced, the changes to Disability Living Allowance were sweeping in a way some had feared but not expected. D L A will cease to exist in 2013-14, replaced by the Personal Independence Payment (PIP). PIP is supposed to be simpler than DLA, although much of the perceived complexity is due to a wider lack of understanding of the nature of disability. In this context, what simpler really means is cheaper – especially as the plans are to cut 20% of the DLA caseload. This cut will be needed to pay for incredibly costly reassessments to people with conditions with no hope of recovery such as quadriplegia or degenerative genetic diseases. There is a clear indicator of intent to limit entitlement in the words ‘focusing on those with greatest support needs’

Some people may lose money as the aids and adaptations they use enabling them to live with their disability will be considered to negate the need for that financial support. The new system will lead to situations where wheelchair-users who can get around themselves may be denied support, even though the intention of the present DLA system is to help towards extra costs of mobility and care. This approach ignores the fact that benefits may be the only thing enabling the purchase of adaptations such as wheelchairs or use of taxis for those unable to use public transport. In any case, aids and adaptations depend on availability with long waiting lists for appropriate wheelchairs. Many disabled people, including this author, fall through the gaps of the provision in the current system and thus are much more significantly disabled by their environment than impairment.

This change will be an unnecessary and expensive rebranding exercise. Although the caseload will be reduced PIP will still look very much like DLA albeit with a 21st century name at a time when government spending, is supposedly, being squeezed. The current system also allows for automatic entitlement to DLA for certain conditions. The new system will not; all claimants will be required to be reassessed every few years. This is not only foolish, but also costly as automatically entitled conditions are by nature the most severe and incurable. The only thing that will be achieved is extra cost of unnecessary assessment, additional complication instead of simplification and inconvenience for severely ill people. Additional waste comes from ignoring the reality that people will remain disabled and have needs even if they are no longer able to qualify for benefits. They will be ignored up to the point they become seriously ill and end up costing the NHS and local authorities more in terms of hospitals and residential care. Furthermore, the proposed reforms ignore the fact that some conditions are severe but acute. Not supporting short-term illness and disability makes it more likely this will become a costly long-term problem therefore increasing dependency.

The PIP proposals will see some current recipients of social care losing financial benefits now paid over at least in part to the local authorities for receipt of that care. This will force local authorities to make up the shortfall in funding likely achievable through cutting care packages. Another hole in the recommendations made is the impact of these plans on independent living, making that harder to achieve. Removing DLA from those who receive care packages, and especially recipients in residential care, will not promote independence.

This system will use independent assessment to form an objective assessment although it is not known why the DLA assessment is understood to not be objective. Current practice is to be assessed by a variety of resources; information from family or a carer, the persons GP, specialist consultant or physiotherapist are standard with face- to-face medical assessments if these and more do not provide enough evidence. What independent means is that a private company such as Atos will be contracted to run assessments and offered incentives to remove people from the system, as they already do with work related benefits. This process will include meeting with an independent healthcare professional not necessarily qualified as a doctor-working for the assessors similarly to the already problematic Employment Support Allowance (ESA) system. The objections to a private company (foreign-owned) using unqualified staff who know their jobs depend on keeping to strict targets with the sole goal being to reduce benefits are too many to count.

More important is the question of whether it is ever possible to make a truly objective assessment of disability. Disability is, by its very nature, as complex and variable as human beings and influenced by many different factors. What severely disables one person may not be such a significant barrier to another, yet both will require tailored support to enable them.

The focus on DLA as a disincentive to work is false and disingenuous. People who receive DLA do often have lower work expectations as the reform consultation paper suggests, and rightly so. Regardless of desire, many disabilities and conditions make work impossible. Disabled people are often unable to compete equally in the labour market, even if there is work for them, which too often there is not. People with high rate awards have highest level of disabilities and are least likely to be able to work regardless of benefits. Those who do work and with lower awards are often only able to work because of the aids, support and adaptations DLA allows them to purchase. The focus on move to work has no place in a discussion about DLA other than to make the important clarification that DLA is not work related and exists to assist life with a disability.

“Paying a fortune to the five million on handouts - like X Factor reject Wagner Carrilho - is a major reason the UK's deficit soared to a crippling £155billion, Tory minister Iain Duncan Smith told The Sun.”

The first annual review into the performance of the ESA Work Capability Assessment by the independent reviewer Professor Malcolm Harrington has been published, and calls the operation of the WCA by DWP and their contractor ATOS Origin into serious question; but did the review itself address everything it should have? As an ESA claimant and one of those who made submissions in response to Professor Harrington’s call for evidence I read the report with considerable interest and many of the conclusions and recommendations are an acknowledgement of the concerns expressed repeatedly by the disability community over the last two years or so, however detailed examination reveals some serious issues with the review. This article focuses on those issues, but that should not be taken to mean an outright condemnation of the report.

The issues with the report fall into three groups: concerns not addressed at all, concerns reported but not addressed or not adequately addressed in the recommendations and concerns with recommendations that appear to preserve or even exacerbate the problem rather than challenge it. Rather than deal with the concerns in thematic groups the ordering of the report has been retained for ease of cross-referencing.

Foreword

Professor Harrington lists a number of organisations which he met with to discuss the situation: disability charities, unions, DWP, JCP, ATOS Origin, but how much direct contact he had with individual disabled people trying to negotiate the system is not clearly indicated. It is unclear whether the review passes the litmus test of ‘Nothing About Us, Without Us’.

In his introduction Professor Harrington refers to Dame Carol Black’s report ‘Working for a Healthier Tomorrow’, describing it as part of the wider context within which the WCA has been introduced. Unfortunately Dame Carol’s report is fatally flawed by failing to acknowledge the widespread disablist bigotry experienced by disabled people in the workplace, the ultimate reason that forces many of us to access the benefits system and keeps us there, no matter our desire to work. There is no indication within the current review that Professor Harrington truly understands the sheer volume of discrimination experienced by disabled people both in finding work and in retaining it. Without that understanding, Professor Harrington lacks the perspective to view the WCA system and its outcomes from within the context experienced by disabled people.

Slightly later in his introduction Professor Harrington states ‘In addition, some conditions are more subjective and evidently more difficult to assess.’ Most disabled people would regard this statement as blatantly obvious, it is not unusual for disabled people to go through decades of medical treatment without a clear diagnosis, yet it appears that the impossibility of simply pigeon-holing disabled people according to some simple schema comes as a startling shock to DWP, ATOS Origin, and to Professor Harrington. Having identified the problem, Professor Harrington then fails to follow through to the logical conclusion that a computerised assessment system, as used by ATOS, is clearly not fit for purpose, because it cannot make an individual assessment of need and necessarily relies on a limited set of pre-programmed rules. It is worth noting with regard to this that both the Disability Discrimination Act and the new Equalities Act are built around, and define in law, the absolute necessity of dealing with each person’s disability on an individual rather than procedural basis.

Professor Harrington’s introduction closes with a paean to the benefit of work which can be summed up in its opening sentence: ‘Work is, by and large, good for people.’ This claim is repeated as the opening statement of the immediately following executive summary and at regular intervals throughout the review. Unfortunately the WCA is not dealing with a ‘by and large’ population of claimants, it is dealing with a population of people who universally experience difficulty in working because of their disabilities or illnesses and in many cases will find working adversely affecting their health. Professor Harrington’s repeated references to the benefits of work, which also raises serious concerns in other areas dealt with later, without similar acknowledgement of the universal difficulties faced by the disabled claimant population in accessing and accomplishing that work, raises serious concerns about the neutrality of his position.

Executive Summary

The Executive Summary states ‘The Work Capability Assessment (WCA) was designed to focus on a person’s capability rather than their incapacity’ and Professor Harrington clearly accepts this point as unreservedly a good thing. Yet capability and incapacity may often be diametrically opposed. To use my own situation as an example, I am capable of work that many people might label ‘rocket science’, yet doing that work results in rapidly rising pain levels, which in turn interferes severely with my ability to work at that level and ultimately prevents me from working at all. It is difficult to accomplish much while curled in a foetal position on the floor as a result of the levels of pain working has engendered. Any assessment which does not focus on both my capability and my incapacity will necessarily fail me.

Included in the review’s recommendations is a need to institute ‘champions’ in each assessment centre to mentor staff in dealing with mental, intellectual and cognitive health issues, an area where clear failings has been identified. However the review itself identifies that claimants from many other areas of disability, in essence all but people with SVIs, or who are wheelchair users or amputees and fall within the traditionally recognized definition of ‘disabled’ are experiencing similar difficulties in conducting an educated dialogue with the ATOS assessors, and the failures in education lie with the assessors, not the claimants. What goes for mental, intellectual and cognitive health issues, also goes for invisible disabilities, for fatigue and pain based disabilities, for anything which cannot be physically waved in the face of an assessor. Appointing mentors for mental, intellectual and cognitive health issues is essential, but must not stop there, and the need to educate ATOS staff around basic disability issues raises serious concerns with respect to the basic adequacy of the ATOS training regime.

Professor Harrington states that a focus for his second report will be the descriptors used in the assessment system, particularly with regard to the coverage of fluctuating conditions. However there is no indication that this is intended to do anything other than tweak the descriptors, no indication that the basic suitability of fixed descriptors against an infinitely variable range of disability will be seriously questioned. This represents a lost opportunity of significant proportions.

Chapter 1: The Review Outline

The first concern which needs to be addressed is the startlingly late appointment of Professor Harrington to perform the review. This did not occur until 29th June, 2010, with the review due by November, a seriously problematical amount of time in which to produce a report of the quality and depth the subject required. A further, related, concern for many disabled people subject to the WCA will have been the appointment of an occupational health specialist to conduct the review. The only contact many of us will have had with occupational health physicians will have been with the hired guns who wrote the medical reports to back up companies which had decided our disabilities made us too much trouble to continue employing. No matter the independence and good intentions of Professor Harrington, our past experience with openly disablist behaviour by other members of his discipline will compromise the perceived independence of his report. Someone from within the disability movement, perhaps one of the past EHRC Disability Commissioners, would have been a far better choice by having the credentials to be taken seriously by both government and disabled people.

Similar concerns exists with the panel appointed by the Secretary of State to oversee, advise and challenge Professor Harrington, which includes one senior GP, two Occupational Health professionals who work for major employers, and only one representative from a Disabled Peoples Organisation. One of the Occupational Health professionals also represented the CBI, a particularly puzzling, if not troubling, appointment.

The report clearly identifies the concerns of disabled people that their answers are being frequently ignored, distorted or downright falsified by ATOS assessors, Professor Harrington himself states “It is clear that the process by which WCA decisions are reached is crucial to ensuring the fairness of the overall assessment. Individuals need to be treated with respect, need to be listened to and be able to get their case across,” yet methods to address these concerns are signally absent from his recommendations. The suggestion of a trial of recording interviews and consideration of providing an executive summary of the WCA to the claimant might be argued to address this, but the structure of the recommendation seems to suggest that Professor Harrington has concluded the concerns expressed are largely not factually correct, that disabled claimants do not understand the structure of the assessment and that they will be forced to acknowledge this if presented with clear evidence of what was said and how the process was conducted.

But what if the evidence from the trial shows instead that the problem does lie with the assessors, as the disability community believes? A whole year of additional distorted reports will have resulted, never mind the distorted reports that have gone before. How will the people subjected to those distorted reports find justice?

Equally Professor Harrington reports the concerns of disabled people that assessors are extremely reluctant to allow them to fully explain their situation and why it limits their ability to work, trying to force them into yes/no answers that have no place in any intelligent discussion of disability, and attempt to hurry the assessment to a conclusion in order to allow them to complete both it and their report in the allocated 46-49 minutes, something which apparently concerns even the assessors themselves, yet there are no related recommendations whatsoever. Are we to assume therefore that Professor Harrington does not believe it is important to the assessment process that we are entitled to fully explain our situation and likewise accepts unreservedly the use of the LiMA computer programme whose limited functionality straitjackets the assessments in this fashion?

Chapter 2: The Evidence for a WCA

Chapter 2 opens with several pages extolling the virtues of work and demonising the health risks of being out of work, an attitude summed up in the statement “It must be made clear to all sections of society that being out of work is bad for an individual’s health.” This level of diktat is inappropriate in any independent review, particularly a review looking at a specific population of disabled people for whom being in work is entirely likely to have deleterious consequences. There may indeed be benefits from being in work in the general case, but we are not dealing with the general case and Professor Harrington appears to have forgotten this. Ill-considered generalisations about the ability or not of disabled people to work, further distorted into mindless bigotry by the yellow press, are leading to a significant rise in negative perceptions of disabled people from the non-disabled populace and disabled people are experiencing an all-too-necessary increase in their general fear of abuse as a result. To see ill-considered generalisations of this type repeated in this review, with an exhortation that everyone must believe them, is distressing in the extreme. At best this is a further example of Professor Harrington being unable to perceive the situation from the perspective of the individual disabled person.

Professor Harrington goes on to conclude Chapter 2 by arguing that the case for the benefit of work and the appropriate nature of ESA and the WCA is therefore proven. Yet nowhere in the chapter has he even discussed a dissenting opinion. A debate in which only one opinion is allowed is no debate at all, an argument to which no challenge is permitted is no kind of proof, scientific or otherwise. Work will benefit many disabled people claiming ESA, it will absolutely not benefit all and whether ESA and WCA are the most appropriate methods has not even been addressed, never mind pursued to a conclusion. And that is without even discussing whether WCA outcomes are matched by the availability of work and the willingness of employers to hire disabled people.

Chapter 3: Assessment: Process and Numbers

The report acknowledges that a large percentage of claimants fail to complete the WCA process, but fails to address several issues relating to this. Unaddressed, in fact not even acknowledged, is the deliberate and intentional use of ESA by the DWP as a holding pattern for benefit claimants who become temporarily too ill to actively look for work on JSA or who become unemployed for narrowly specific health reasons that do not limit their general employability. These claimants form a significant cohort of withdrawn claims and WCA attendees who can be largely guaranteed to fail the WCA, their existence serving to distort the wider statistics around ESA when combined with those claimants with significantly limiting long term disabilities. Failure to identify this cohort and classify them separately in the provided statistics compromises the value and function of those statistics.

Other issues leading to prematurely terminated claims include the intimidating nature of the ESA50 form, which is discussed later, and the widespread concern among disabled people that many claims are being abandoned because of the contempt with which disabled people perceive themselves to be treated by the process. The use of these statistics of abandoned and rejected claims by both the DWP and the yellow press to imply that ESA claimants are universally workshy (an example of collective bigotry that amounts to a deliberate and sustained campaign aimed at inciting disability hatred amongst the general populace, and confirmed to be working by the BBC’s recent survey) makes this an area of clear concern for disabled people, whether claimants or not, and further contributes to abandoned claims, but Professor Harrington glosses over it as an area with conflicting data, ATOS claiming there is no problem, respondents to the review that there is. The conflicting data may prevent conclusions from being firmly drawn, but should not have prevented the recognition that this is an area of extreme concern to the disability community, requiring corrective action to be taken

Chapter 4: Experiences of the WCA

Professor Harrington dismisses concerns expressed about the fairness of the process by disabled claimants as ‘misconceptions’. I find his attitude here very troubling. At best it is dismissive, there seems no attempt to understand why the concerns are so persistent, nor whether they may in fact represent a genuine discontinuity in his understanding resulting from an inability to consider the situation from the viewpoint of a disabled claimant. Statements made by the assessor during my own assessment would seem to validate these supposed ‘misconceptions’ as fact, not fiction, nor failure to understand. Professor Harrington worries that these ‘misconceptions’ may become commonplace. They already are, and that information is readily available on any disability discussion board.

Professor Harrington makes the bald statement that there is no evidence that ATOS are being incentivized to rule a certain percentage of claimants as fit to be placed on JSA and dismisses opinions otherwise as misconceptions, yet there are many anecdotal reports of assessors being pressurized to declare more disabled claimants as fit for work. Even Danny Alexander, MP, before accepting a position in the government as Secretary of State for Scotland and rapid promotion to number 2 at the Treasury, stated “There’s a suspicion that ministers may well be incentivising Atos to actually give results of the assessment which take people off benefit.” Convincing argument does not work in the way that Professor Harrington seems to believe it does, a statement that a widely held view is wrong needs to be supported by evidence. It is Professor Harrington’s remit to produce a report showing where the WCA is failing to meet its requirements, one of those requirements is that it is perceived to operate in a fair manner, and currently that perception is widely held not to be the case by members of the disability community and others.

Even if the ATOS contract does not include incentives, the possibility exists that ATOS assessors may be incentivized for internal, company reasons or even because of the perceptions of their immediate supervisors as to what the company really wants; the review even acknowledges later that any assessor whose results differ from the local average will be audited, which clear incentivizes individual auditors to converge their results on an average, no matter the actual situation of the claimants they see. These concerns cannot be dismissed in a sentence, particularly when to dismiss them contradicts evidence elsewhere in the report, they must be addressed and explained away, any less suggests a contempt for our concerns and calls the reliability of the statement into question.Rhydian Fôn James’ Guardian article on the review also points out the existence of an implicit cost goal for DWP and ATOS, the need for the WCA to generate at least £250m in savings just to break even against its own costs.

Professor Harrington goes on to state that disabled benefit claimants should not fear being found fit for work and placed on JSA because DWP personnel are committed to helping disabled people and the procedures in place for disabled claimants of JSA should alleviate the concerns of those who find themselves transferred onto it. Having been a disabled claimant of JSA until February this year, before the DWP decided that JSA was completely unable to cope with my disability, I can assure Professor Harrington (as I did in my submission to the review) that the many frontline DWP personnel I dealt with, including DEAs, were near universally clueless about disability, the only exceptions being themselves disabled, and that their concept of appropriate support for a disabled claimant was to try and force me into minimum wage positions from the outset, no matter that I am a highly skilled engineer with extensive experience, an attitude that amounts to institutional disablism. It took a complaint to ministerial level to actually get them to look at my disability on an individual basis, not treat me as identical to all of their other non-disabled claimants. Other disabled people, from all across the country, report near-identical experiences. DWP and JSA are part of the problem, not part of the solution.

DWP’s sub-contractors are actually worse, even specialist disability charities such as the Shaw Trust and RBLI are widely reported to be operating from inaccessible premises, no matter the access requirements of their entire client base, while the non-disability specialist agencies lack even the most basic knowledge and understanding of disability issues, such as the legal requirements on them in relation to access and data protection. Meanwhile their overall tone in written communications can best be described as threatening (something which the report does acknowledge), not a manner likely to be productive with the many disabled people who have problems in dealing with authority or stressful situations. JSA is not fit for purpose with respect to disabled claimants.

Problems with the ESA50 form required to be completed by all ESA claimants are acknowledged in the report, but appear to have little understanding of the difficulties disabled people experience with it. The form is tens of pages of questions asking for the most intimate detail of how disability affects our lives as disabled people, yet appears to have been designed by someone completely unaware that many disabled people will find the form intimidating to the point of preferring to terminate their claim, that several decades of complex and occasionally contradictory symptoms cannot easily be fitted into a two inch high box, and that many disabled people will find a paper form difficult if not impossible to deal with due to the nature of their disabilities. Parts of the problem are easily dealt with by ensuring that an electronic version of the form is both available and publicised, but no such recommendations are made. Some of Professor Harrington’s statements in relation to the form are themselves problematical, he talks about people trying to put entries against as many questions as possible and of being coached to do so by advocacy organisations as though these are problems. Why does he consider it a problem for someone to identify every area in which their disability affects them? I was surprised by how widespread the effects of my disability were when I sat down to think about it in the systematic manner that the form enforces? Is there really something wrong in realising that your physical disability may affect you psychologically and acknowledging this? Is it really so wrong to complete the form from a position of knowledge rather than ignorance? (My WCA assessor certainly appeared to think so).

Equally Professor Harrington reports a statement by a tribunal president that “Many claimants give careful and detailed descriptions [in the ESA50] but this evidence is never referred to in the ATOS HCP report. Nor is it drawn upon by the decision-maker. It seems to be air-brushed out of the information gathering process”, yet in the immediately following recommendations section no recommendations are made to enforce the consideration by DWP and ATOS of the sole opportunity that claimants have to make a considered and systematic report on the nature of their disability.

Chapter 5: The ATOS Assessment

Chapter 5 relates that ATOS employ some 1250 assessors and that in the last year they have stopped using 25 of them for cause. Professor Harrington appears not to realise that an effective dismissal rate of 1 in 50 professional staff per annum is symptomatic of an organisation with a very serious problem.

Having discussed a wide range of misreporting by assessors, the review then dismisses them with the statement “In part these concerns reflect the difference between a medical examination, which focuses on diagnosis, and the ATOS assessment, which looks at a person’s functional capability.” Yet all of the misreporting detailed is directly or potentially relevant to functional capacity.

Professor Harrington acknowledges that the very limited training of ATOS assessors is an area of great concern for disabled people. Many disabled people have combinations of medical conditions that have taken specialists many years to reach a diagnosis over, others are without a specific diagnosis even after decades of investigation, but are recognised as genuinely disabled by the specialists who have spent years working with them. How is someone without a background in disability medicine, with barely 8 days of training, meant to be able to give a superior assessment of capability to work in comparison to a specialist with years of experience of both discipline and patient? To quote my own pain management specialist: ‘It is nearly impossible to get a doctor from another discipline to adequately acknowledge how disabling pain can be’. How can I trust the judgement of someone with 8 days training in the face of that? How can any disabled person trust it? How can Professor Harrington fail to address it in his recommendations?

Chapter 6: The Decision Making Process.

This chapter is perhaps the strongest of the review, identifying major weaknesses in the balance of the assessment process that mean it is not working as defined and outlining corrective action. Unfortunately the needs of the assessment process may run counter to historical social forces.

Professor Harrington acknowledges that the system is designed to provide for DWP decision makers to consider all of the evidence available and to overrule ATOS reports when needed, but that the decision makers themselves have identified that they are uncomfortable overruling decisions by ATOS medical staff ‘because they’re doctors’ and states that their training should be bolstered to support them in this. However this fails to address a widespread societal problem relating to the historical perception of the doctor-patient relationship. The perception of doctors as godlike figures of wisdom is still regrettably common and cannot be overcome simply by a day or two of extra training, yet the system as designed depends on precisely that.

The report also acknowledges that a high percentage of disabled people are apparently unaware that they are able to present medical evidence with the ESA50 and at the WCA itself, not simply at the appeal stage, while those who do present it frequently believe that it is simply being ignored by the ATOS assessors. The ability to present medical evidence is simply not being made known to disabled claimants, yet there are no recommendations to change this. Equally the failure of ATOS assessors to address medical evidence contrary to their conclusions in their reports to the DWP is clearly an area in need of urgent attention. It would not be unreasonable to consider the suppression of contrary medical opinions, particularly as part of a quasi-legal process, to be a serious breach of professional ethics.

Chapter 7: Appeals

In discussing appeals Professor Harrington implies that many appeals are filed because of ignorance of the assessment process on the part of claimants. This may be true in some cases, but cannot explain the very high rare of successful appeals: over 30% of decisions are being appealed, 40% of those are being upheld. Any quality department in any business would be horrified by a 12% reject rate and heads would roll if it was not fixed, The report acknowledges the high rate of appeals and hopes that they will be reduced by the additional training to be provided to assessors and the additional communication to take place with claimants, but the real problem here is not the rate of appeal, but the rate of success appeal. 4 out of 10 assessments taken to appeal are being judged to be incorrect. Imagine the outcry if a similar situation happened in the Criminal and Appeal Courts, yet the report simply glosses over this by hoping additional training will fix it.

I cannot help but be extremely concerned by Professor Harrington’s recommendation that appeal tribunals should be reminded of the benefit of work. It is impossible to construe this as anything less than an attempt to undermine the independence of the tribunal system. Is work beneficial? In general, yes; but tribunals are not dealing with the general case, they are dealing with the specific, and for many disabled people, forced into the appeals system by the failures of the WCA, work means pain, distress and the likely worsening of their conditions. An attempt to bolster the case for work without parallel reminders that this is not generally applicable to the population of disabled people who find themselves arguing their case for justice before a tribunal distorts and brings into clear question the fairness and impartiality of the appeals process. This appears to be a case of Professor Harrington thinking solely as an occupational health physician, hanging doggedly onto one of that discipline’s sacred Shibboleths come what may, and forgetting his responsibility to approach the context of the review impartially and with due regard for the needs of both the people operating the system and those who find themselves struggling to navigate it.

Chapter 8: A Programme of Work For Year 2

The approach for Year 2 necessarily draws on the conclusions discussed above, repeating the same flaws already identified. That is not to say that there is no value in the work proposed, simply that it fails to address major areas of concern. A major focus for the year is looking at the descriptors used in the process, but nowhere is there any discussion of considering whether the use of descriptors is actually appropriate, nor is any review definitively proposed outside of the area of mental, cognitive and intellectual impairments, even though identical concerns over descriptors are acknowledged by the review to exist for fluctuating and pain and fatigue based impairments. The possibility of looking at these is raised, but no more than that.

Conclusion

The conclusions repeat the tired assertion that work is universally good for you and the WCA the way to get the disabled population into work. There is no real evidence of independence of thought here, simply someone who believes the problem and the solution are precisely as the government has outlined and merely wants to smooth the process. That not all disabled people can work is barely acknowledged, that the UK workplace in general is not remotely disability friendly is never touched upon.

Not Addressed

Completely missing from Professor Harrington’s assessment is any reference of the physical suitability of DWP and ATOS premises and those of their training contractors, an issue that is frequently raised on disability discussion boards (and an issue which I for one included in my submission to the review). People have arrived for WCA and other ATOS or DWP operated assessments and meetings to find offices without on-site disabled parking, offices that are inaccessible to wheelchair users, offices that have failed to provide needed adjustments in seating and other areas. If the basic building stock is not fit for purpose, then how many disabled claimants are deciding that if the system treats their most basic needs with this contempt then they have no hope of a fair hearing and give up their claim? I know that I very nearly did. Access is not a luxury, for many of us it is an essential, our right to it is enshrined in law and failure to provide it can throw us into days, weeks, or even months of exacerbated symptoms.

Fit for Purpose?

There is clear value in parts of Professor Harrington’s report, he has identified major failings in the operation of the WCA system, but he has done it from what is largely an establishment viewpoint and has signally failed to address the needs and concerns of the disabled people who find themselves at the sharp end of the system’s decision-making process, even in cases where he has identified and reported on those concerns. The failings in the review may result from its rushed nature, but that explains rather than excuses. To sum up the report: D-, must do better next year, and, unfortunately, the personal opinions in relation to work expressed throughout the report mean that I think we may have the wrong man for the job.

And, as always, looking at ESA and the WCA only addresses a small part of the difficulty of moving disabled people into work. The active and deliberate disablism that forced many of us out of the workplace in the first place and that continues to deny us positions within it will not magically disappear by forcing hundreds of thousands of disabled people onto JSA, it will simply obfuscate the intolerance we face and draw a polite curtain across the existence of that den of bigotry at the heart of British industry.